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in reply to: Found this while researching and thought it interesting #1179028

Thanks for all this information. for someone just starting out with all of this it is very useful.

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in reply to: My Thyroid is Talking but My doctor isn’t listening (Communication Difficulties) Please Share your stories!! #1178708

Sometimes I think BOTH!

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in reply to: yay I’m back! am incognito now lol – aka rae/bluewren #1178688

Hi Rae. I am new to all of this but Also had a PCP who basically let my TSH of 0.03 fall through the cracks because my T3 and T4 were not out of normal range (although they were at the upper limit of normal then). I had symptoms then and he gave me a prescription for Lexapro, an anti depressant which i didn’t take because I was convinced I WAS NOT CRAZY! Anyway went to endo and now here I am. I have requested copies of everything, keep a journal etc. Just in case I have a day where I feel like I am engulfed in a fog and can’t remember the sequence of everything. Has nothing to do with the over 50 thing! lol .

WIsh you well. Great to see how supportive everyone is to one another here!.

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in reply to: meds, nightmares and feeling blah #1177662

Yes I understood what you meant actually. Have done a lot of reading these last several weeks. Need to have more knowledge on board. Reading these posts and having people like you to guide us through all of this really helps. I don’t feel all alone!

Thanks for that here!

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in reply to: My Thyroid is Talking but My doctor isn’t listening (Communication Difficulties) Please Share your stories!! #1178706

I too was frustrated at the lack of understanding my PCP had when I opted out my extremely low TSH at the time it was o.o8 but T3 and T4 were normal. I had back issues several months prior and every time I went to the pre-op suite for an epidural my heart rate was in the 90″s. Unusual for me since it has always been in the 70″s . I was also very jittery at that time and had episodes of crying and normal and crying again. When I went for my check up to the PCP and pointed out these symptoms as well as the TSH he circled the T3 and T4 and said “Your labs are normal the TSH doesn’t mean anything.” He basically told me it sounded like I was stressed out, working full time, two kids, home issues etc and gave me a prescription for Lexapro. I really felt like I might be going crazy at that time. I was concerned about the lab so made an appointment on my own with an endo in March who basically told me I had Graves (wow pretty impressive that he diagnosed me without any further tests) and gave me a prescription for Tapazole and said don’t fill it until a repeat set of labs. Four days later I called the office to find out what the results were and the secretary called me back and told me the doctor said “your graves disease is worse, start the Tapazole and do another set of labs in six weeks” Wow didn’t even have the common courtesy to come to the phone and tell me himself. Pretty cold! As far as my PCP is concerned I sent him a copy of the scan report and antibody tests and wrote on the bottom “Guess LExapro wasn’t really the way to go!”

Needless to say I “fired both of them” and went to another endo who ran additional antibody levels and scans. The only problem is that she is only in the office once weekly. I work in the same hospital as she does and she usually emails me and then calls. I guess that is better than no communication. I wish the docs would all just sit back and realize that a 15 minute appointment is not enough time to voice concerns etc. Wish there was a better way sometimes…..

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in reply to: Made decision for surgery #1178457

Hi Amy. I hope all went well for you today. Sending well wishes your way…………………..

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in reply to: Well, here goes! #1173618

AZ Graves. While I am new to all of this I have been reading what everyone is going through. I too wish you the best and hope things calm down a bit!

ALl the best! Geri

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in reply to: newly diagnosed #1177924

Hi Dee. Thanks for your kind words and yes I had found support immediately after joining. The best thing if there could ever be a best thing about being diagnosed with Graves is that at least i know i am not going crazy. The neuropsych stuff like anxiety, jitters, nervous ness and mood swings were making me think I was losing my mind. At least I know what it is and now have to decide on what to do. So much great information and support here that can at least give you an upper hand on knowing what the endo is talking about. Curious why your endo doesnt want to do RAI, mine mentioned that first up. Am going to talk to my endo about starting ATD first. my son is graduating from high school next month, has prom etc etc and I just want to try and nuetralize this first before I jump into more aggressive therapy.

quote: Won’t let Graves get in the way………

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in reply to: meds, nightmares and feeling blah #1177660

YEs thanks Kimberly!

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in reply to: newly diagnosed #1177922

Thanks Kimberly. I will keep you posted. I am already reading as much as I can so I don’t talk to the endo blind! I will see her Wednesday!

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in reply to: newly diagnosed #1177920

Hi to all! OK so just got back the results of the ultrasound and RAI scan:

ultrasound: Multinodular goiter (4 identified nodules)
RAI scan: uptake is in the hyperthyroid range with homogeneous distribution

So I am waiting for the endo to call me. I was able to get the report on a patient portal after 72 hours.

TRAB antibodies positive, TSI antibodies mildly elevated.

Wow too much information!

So my question is, do I have two seperate problems causing the hyper or is it all from Graves!

Geri

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in reply to: newly diagnosed #1177919

YEs thanks Shirley I appreciate it and I hope this post finds you well!

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in reply to: newly diagnosed #1177917

OK so here is the most stupid question I could ever think of? Once you have a TT or RAI and you become hypo there is no more Graves disease?

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in reply to: meds, nightmares and feeling blah #1177658

Mwhitney, sorry to hear you have had such a rough course. One thing I have to say from reading all these posts is that there is so much “strength” in your stories. I feel that when I read what everyone is going through. I too feel like I am a strong person but some days I feel so defeated! HAte showing that other side of me to the people around me. Sometimes I think they feel I am crazy because it is so out of character for me, this sometimes anxious, weepy, down in the dumps person is not what they are used to.

I keep hearing a lot about the RAI treatment. Is this generally something someone does early on or do you try and simmer down the graves and live with it on the ATD’s for awhile? Has anyone had problems with their liver or white count from the drugs?

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in reply to: TRAb/TBII testing #1178680

THe trab test was the first test that my new endocrinologist wanted to run The first endo just ran the tsp and tsi level. the tsi level at the time was mildly elevated (just starting to progress at that time). needless to say I changed endos because he had his secretary call me and tell me I had Graves disease. Nice huh? my new endo ran the trab level right away and then scheduled me for an RAI uptake and sono. Covered all the bases. I sometimes think that some of these docs think the public is under educated. In this day and age how can you not research every little thing.? Anyway, still trying to decide what to do next. I hope I decide on the right treatment for me. Thanks to all for such a wealth of information that you provide here on this site. Good luck to all!

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